Samuel

SAMUEL - EIGHTEEN WEEKS TO THIRTY FOUR WEEKS

This was originally written prior to the birth of our son and is our experience up to the thirty fourth week of an otherwise healthy and wonderful pregnancy. I have added some updated information since Samuel’s birth in September 1997.

It all began in April 1997 when Peter and I attended the first scan of our second baby at 18 weeks gestation. The radiographer informed us that our baby had a cleft lip and palate. I was cool, calm, and collected in his office but when we got to the car I crumbled. I didn’t even know what a cleft lip and palate was let alone seen one. The radiographer was very kind and was able to give us a little information but our steep learning curve was about to start.

I did a lot of ringing around trying to find answers to my questions and this helped in the first instance because it kept me occupied…. (besides looking after a 2year old). Initially I did not know who to contact so rang the Plunket Family Centre who put me in touch the Cleft Lip and Palate support person in my area. She was able to visit with me the following afternoon and I will always be grateful to her for taking the time to listen. I poured my concerns out to her and felt much better meeting someone who had been there. This was the end of week 18.

Through a series of circumstances I was introduced to another mother with an older child who was about to attend their annual visit to Middlemore. She invited me out to Middlemore to show me around and give me some of the following information. I found this extremely valuable as part of the coming to terms with what was going to happen. This lady who did not know me was able to share some of my pain and this meant a lot to me.

During this visit I met a couple with their new baby son. I have kept in contact with this family - there is four months difference between our two boys. I subsequently became involved in a locally organised coffee group where a lot of information is swapped mother to mother, parent to parent, in an informal manner which has and will continue to assist us in the years ahead I am sure.

I also contacted the following support people to be on call soon after the birth of Samuel.

• Lactation Consultant - I was determined to attempt to breastfeed
• Paediatrition
• Plastic Surgeon
• Speech Therapist
• Pharmacies
• Registrar of Births
• Income Support

The Lactation Consultant whom I contacted was able to offer a video of the benefits of breast feeding, expressed breast milk and since this is how I proposed to feed our baby - all things being equal - I was grateful for this information. Other information included case studies and brochures on other methods of feeding.

We contacted a Paediatrician and arranged to visit and ask some questions about his role in looking after the baby immediately after the birth - Samuel had a suspected reflux kidney on the scan which subsequently disappeared. We also requested that he check Samuel over at six weeks old prior to our discharge from our midwife. Our Paediatrician also sent a letter of referral to Middlemore and the plastic surgeon prior to the birth (which enabled us to get an appointment 6 days after Samuel’s birth).

As a consequence of this visit and information from other parents we began to realise just how important it is to be proactive with the hospital system to ensure progressive deadlines were met in respect of operations per age.

I later discussed other methods of feeding with our Speech Therapist who is able to assess feeding and much later speech and arrange for teats, bottles etc which were able to be subsidised.

Soon after Samuel’s birth I realised that normal breastfeeding was not an option, so I rang several pharmacies about breast pump hire and found a variety of prices on offer and found I would have to purchase a kit which could be used with the hire pump. Subsequently I purchased a mini pump, which has proved an excellent alternative and backup for when I was are away from home and I even used it full time rather than the large hire pump for three months. In all I pumped for 5 months and froze litres of milk for after Samuel’s operations. It was hard work but for us, it was well worth it.

During the last four months prior to his birth I contacted Income Support to obtain the Handicapped Child’s allowance forms and information. The Registrar of Births to obtain information on birth certificates. It is my understanding that the earlier you obtain an appointment with Income Support the earlier the allowance is given. The Handicapped Child allowance is not backdated. We could also claim for travel allowance to Middlemore from North Health.

We still have six weeks until our little bundle of joy arrives to share in our family life but feel that all the necessary help and support that we may require has been put into place. I have also heard the the AIT Nanny school can offer nannies who may be able to help with your new baby or older children as part of their special needs training. I suggest contacting local Nanny schools to see if they are able to offer this also.

Despite the fact I am able to write this now in a logical manner, that was not the case in the first three weeks. I was very emotional and went through the grieving process of why, how, when. (Remember this it is only natural). It has taken time to come to terms with the news but I now know that the support is there for us. Its taken a while to get from 18 weeks to 34 weeks.

Since this was written Samuel was born at 38 weeks on 10 September 1997. Samuel has an incomplete bilateral lip and complete bilateral palate. We had a most beautiful birth and I would go through it all again tomorrow. My regret is that I did not enjoy being pregnant this time - I put a lot of it down to worry about the unknown. I still remember just wanting to see his little face towards the end.

Samuel turned one last month and the past year is another whole chapter but I would not change the way things are for the world. He is a happy, easy going wee boy with a lovely smile. Before he was born we called him “wonderful” and our daughter (2 years) ” beautiful”. He is still wonderful and she is beautiful but then we are parents.

If you are reading this prior to the birth please enjoy it - these babies are very precious - like all babies - they are our own precious babes to love, nurture and care for.

I can be contacted on thomson-tes@xtra.co.nz.

Sue Thomson